Within the lung cancer community, it is rare to hear someone refer to either themselves or their loved one as being in remission. Rather, the use of the phrase NED (no evidence of disease) allows patients to feel the most at ease. Why is this? What is the difference?
In speaking with several lung cancer patients, they expressed a consistent sentiment: they are “stable” OR they are “NED” – meaning that there are no changes or all the disease is gone from their bodies.
Dr. Michael Weitz, a physician and lung cancer patient (currently NED) helped to break it down this way:
“Remission needs to be broken up into two categories: Complete and Partial Remission. Most doctors deem Complete Remission equivalent to NED. Partial Remission connotes cancer that is not actively growing over a period of time, also considered a stable disease. While partial remission, complete remission, and NED are all great news to cancer patients and their doctors, partial Remission vaguely implies that they are not “out of the woods.” They will need to be more closely monitored. NED is what all cancer patients aspire (dream, pray, and hope) to hear by their oncologists.”
Bobbi Cohen, who was diagnosed with lung cancer in 2004, says that she has never thought of the word “remission” in connection to her case.
“I’ve never thought of myself as NED because I still have so much going on in my lungs. There are still nodules and ground glass opacities. As a matter of fact, nearly four years ago there was a change in one of the nodules. And after being watched for 3 years, my surgeon said it was time for it to be surgically removed. My oncologist and the tumor board both felt that I could still wait and they’d monitor. But I went with the surgeon’s recommendation. And it turned out to be cancer again.”
It took the better part of a year of feeling unwell before Tabitha Paccione would receive the shocking news that she – a young, in shape, and otherwise healthy woman – had lung cancer. Currently NED, Tabitha speaks honestly about her own personal confusion between remission and NED.
“I have always been confused with the actual difference between remission and NED. It just always seemed so closely entwined. I was under the impression that remission meant that all of the cancer was dormant or “asleep” in a survivor’s body. I was told by my oncologist that I am currently in remission, but in the same breath, he also said that he sees no cancer in my body.”
“Ever since I was diagnosed I have heard that NED was the ultimate goal, and I dreamed of one day getting there. I now understand how truly complex cancer is, and I am now able to truly appreciate that whether I am stable, in remission, or NED, I am living. And I am so grateful for that opportunity. Those terms don’t actually define me. I am so happy to be alive now. And I am happy to know that one day, that term NED will apply to everyone because of how hard we are fighting for more funding and more research. Hopefully, I will be here to experience that joy, but either way, I am just happy to be here right now in this moment.”
When Yovana Maria Portilla was in a fender bender, she was brought to the hospital to be checked out. Routine scans to determine any internal injuries unmasked a tumor on her lung. A few months later, Yovana, just 34 years old, learned that she had early stage lung cancer. So early, in fact, that it was deemed operable.
“I am more familiar with “NED” (No Evidence of Disease). It is the acronym that was used to describe not only my status after surgery but also my current status. And will be what I will be classified as until I hit the 5-year benchmark. Then I can officially use the other phrase and state that I am “Cancer Free”!
I know when people would initially ask me if I was in remission when I was first diagnosed it confused me because I associated the term remission with someone that had a later stage diagnosis (and might still have illusive cancerous cells roaming in their body) and had gone through chemotherapy or radiation and was taking a break from treatment. And since I did not fall into any of those categories or situations I would always correct them and tell them I was NED.”
It has been seven years since the pain in Ivy Elkin’s elbow and neck turned out to be lung cancer. In the time since her diagnosis, her then tween sons have grown up. And Ivy has become a tireless advocate for lung cancer research. Her thoughts on the distinction between remission and NED:
“I guess I think of remission as definitely just temporary. If I’m taking a drug that’s working and I have no cancer progression and/or symptoms, then that would be remission. I might still have evidence of disease, but it would at least be stable. However, I don’t think I ever thought of myself using the word “remission.” Even when I was in the situation I just described. For some reason, it just isn’t a word that is often used in lung cancer. People refer to that situation as stable instead.”
New and life-saving treatments, along with clinical trials, are happening rapidly. Read more about people living with lung cancer.
New and life-saving treatments, along with clinical trials, are happening rapidly. Read more about people living with lung cancer.